To be a parent of a child with autism- PDA, and facing the ignorance of others

Most of the readers of this blog have a connection to autism. So you will know what I’m talking about when I say how frustrating it is for people with ‘typically developing’ kids to say ‘oh, no child likes change’, or ‘my child had a meltdown last week’.

I have to bite my tongue, because I want to so desperately say…

“You haven’t the faintest clue what you are talking about!”

Yes all children find change hard, especially young children. So Timmy’s first ever substitute teacher may have been hard for him, it is a big change.
My little one has had actual meltdowns (which are when the child can not cope and have an explosion of pent up emotion that can lead to physical violence against the people they love and care for the most- MOST DEFINITELY NOT A TANTRUM), all because I switched from Sky tv to Virgin media TV. The box is different, the TV guide is different, the remote is different. She actually will not touch the remote.

So yes, all kids struggle with change, but autistic children suffer more as they just can’t handle even the slightest change.

– oh so your child had a meltdown did they?
Did they stop when you gave in and gave them what they wanted? Yes… Then it was a tantrum! Stop using language meant to explain the behaviours of an individual that isn’t coping to a child having a tantrum!

It gets a little hard to take sometimes.

Even at our latest trip to legoland we had some ignorant comments about both Dinky and her friend when they struggled.
The reality is that because our kids don’t ‘look’ disabled, or because they walk and talk, people just don’t see their struggle.

I don’t know if it is just me, but when I catch someone lying about their child’s symptoms to get respite and support, it bothers me.
Especially when at one point this person said their child definitely had PDA, and now he doesn’t.

I WISH it worked like that.

I wish I could show her the reality of living with PDA. How everything has to be said in a non direct way. How life is all about walking on egg shells to avoid a meltdown because there are just too many demands in a day.
I wish that it could just stop like that, then I wouldn’t have to worry about what the future holds for my girl. How can a person who is demand avoidant cope in the workplace, as far as I know- most don’t. The ones that do, I am betting that they are the few that manage to coast by in school. Still it is no life for them, they coast, but struggle immensely. So work is just another struggle.

The reality is that having a child with autism is bloody hard work!

There are so many children with PDA that have to be home schooled because their PDA is so extreme they can’t even BE in a classroom.
I have had dinky home for 8 months, it is hard work, I have to be very sneaky in how I teach her so that she doesn’t fall any further behind than she already is. I can’t even ask her to write something because that would lead to her having a meltdown – NOT A TANTRUM.
She doesn’t cope well on public transport, but because I can’t work with her being at home, I haven’t got enough money to buy a car, or pay for the first year insurance, but I have taken the plunge to learn to drive. At least then it is one thing out of the way.

I have to watch Kaitlyn spin and rock when she is stressed out, she goes into her own little world where I can’t reach her and it is soul destroying.
I see the conflict in her when she wants to do something but can’t because of the demand to do it.

The pure ignorance of how upsetting it can be for parents to hear people use their children’s disability to get things they want is astounding. If she had said something like ‘my child has cancer’ people would be disgusted at the fact someone had caught her lying, but because she says ‘my child has autism’ people allow it, like that is a disability one can just lie about as no one can prove it with blood tests or scans. There is always ‘oh I know someone that had to fight for years to get a diagnosis’.

The thing is I’m not actually judging her as a person. Just this action and her ignorance around how hurtful it is to others to have people pretend to struggle like they do, or this person’s child to struggle like their child struggles. It makes it all seem trivial.

Which is why there are statuses on local debate Facebook pages with things like “Autism- is it an excuse for bad behaviour?”

These things really do anger me too.

The ignorance out there is astounding. It just serves to make our lives just that much more difficult.

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4 thoughts on “To be a parent of a child with autism- PDA, and facing the ignorance of others

  1. I wonder if you City Car Club down your way? That would be a cheap way of using a car as you don’t need to pay for any of the expenses like insurance. just a wee thought to consider once you’ve passed your test.

  2. and I do wonder who this mother is whose ignorance is so upsetting and how you came across her. I get very little opportunity to talk to any adults, as my daughter and I live in our bubble of exile – every cloud has a silver lining, eh? No opportunity to talk to adults so no upset from their ignorance.

    • I actually met her through the local autism support group.
      I have left that group now, I’d rather be alone with no support than have to no when I know someone is lying. It was the only adult interaction I got, which is sad for me to lose.

      Hope you and your daughter are well

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